Since our newly elected Vice President Alessandra Tolaccia is a fellow from European Patients’ Academy on Therapeutic Innovation (EUPATI), she was invited to attend the Patient Engagement Open Forum (PEOF) which took place in Baveno, Italy from June 10-12. Straight from OIFE Conference 2025, she attended 2,5 days of educational talks and workshop about patient…
OIFE believes that all research projects affecting OI directly, should have some kind of patient involvement. The purpose is to ensure that our needs, concerns and expectations are properly addressed and considered in different phases of a project. Individual people with OI can be represented by persons from the “patient community”, which covers individual patients,…
On 24 February 2025 in Brussels – EURORDIS hosted their Black Pearl Award show, where they announced the final winners of the 14th edition of the Black Pearl Awards, celebrating the extraordinary individuals, organisations, and companies driving progress for people living with a rare disease. Stephanie Claeys from the OIFE Board was invited as a guest…
OIFE’S FIRST EUPATI FELLOW ALESSANDRA We congratulate our Italian volunteer Alessandra Tolaccia with her graduation in Madrid today, as OIFE’s first EUPATI fellow. The EUPATI patient expert training programme on medicines research and developent is organized by the European Patients’ Academy on Therapeutic Innovation (EUPATI). The programme consists of six modules: 1) Getting started, 2)…
OIFE has many volunteers representing the voice of OI at various conferences, webinars and workshops. This gives us both important knowledge, but also influence. From 14-17 May 2024 OIFE’s former Vice President Dace Liepina (left in the photo) attended The European Biobank Week, where one of the topics was how patient organizations can be involved…
Alessandra Tolaccia is representing OIFE at the EUPATI Patient Expert Training Programme. The EUPATI Expert Training Course is a unique opportunity for patient advocates to receive expert-level training in medicines research and development, specifically tailored for them. The certificate course is a mixture of online and face-to-face education modules over a 13-month period. April was…
Would you be interested in attending a conference about patient engagement in OI research in Bologna, Italy? The conference takes place on June 13th 2024. It is organized by the consortium Remedi4All in collaboration with OIFE, As.It.OI (Italian OI-association), ERN BOND (European Reference Network on Rare Bone Diseases) and EURORDIS (Rare Diseases Europe). Tickets are…
By Alessandra Tolaccia, OIFE Volunteer I have been suffering from chronic pain for over 15 years now, and every time I have approached a new doctor looking for help, the answer has always been the same: pain in muscles/tendons has nothing to do with OI. But why doesn’t my pain go away with the common treatments…
November 22nd we had the great pleasure of being invited as observers to the hybrid meeting of the Patient Think Tank of European Federation of Pharmaceutical Industries and Associations (EFPIA). We learned about the work of other European federations, hurdles and opportunities for how patient organizations can work with industry, medicine shortages and patient engagement…
